ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: epodjn on May 16, 2009, 10:07:45 am
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Do any of you get the feeling from your doctors that they just don't want to talk about it? I am looking for a new neurologist because my surgeon seems to think that because he removed the whole tumor, which I am thankful for, that I should just be happy with that and not be concerned with the aftermath. He has only seen me once since surgery and only wants to see me every six months. He says there's nothing he can do for me so why waste my money and his time. Is that just how it is? should I just accept this? I know everyone progresses differently and no one answer fits every situation but aren't there some guidelines on what to expect?
Also, sorry but I'm new and have so many questions and concerns and no one to talk to about them. But for those of you who have had translab surgry have you had any skull problems. I am developing odd bumps and depressions near the surgical site. It is causing my ear to recede back into my head and now my left temple is sinking in. Is that common? Does anyone else have that problem. My doctor just looked at it and said that happens sometimes, that's his answer to just about everything.
This post and one reply has been split into a new thread. J.S
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Do any of you get the feeling from your doctors that they just don't want to talk about it? I am looking for a new neurologist because my surgeon seems to think that because he removed the whole tumor, which I am thankful for, that I should just be happy with that and not be concerned with the aftermath. He has only seen me once since surgery and only wants to see me every six months. He says there's nothing he can do for me so why waste my money and his time. Is that just how it is? should I just accept this? I know everyone progresses differently and no one answer fits every situation but aren't there some guidelines on what to expect?
Also, sorry but I'm new and have so many questions and concerns and no one to talk to about them. But for those of you who have had translab surgry have you had any skull problems. I am developing odd bumps and depressions near the surgical site. It is causing my ear to recede back into my head and now my left temple is sinking in. Is that common? Does anyone else have that problem. My doctor just looked at it and said that happens sometimes, that's his answer to just about everything.
Epodjn -
This is a common complaint about neurologists, following AN surgery. Apparently, they don't consider facial paralysis and other post-op complications as their concern. I assume that's because they are specialists, hired to remove the tumor successfully. Once that has been accomplished and you're discharged from the hospital and recovering, they likely feel that they have done their job. If you have complications such as facial or balance issues, they are considered part of the risks you have to take with AN removals. These kinds of complications are not within a neurosurgeon's medical discipline and they don't really know what to do about them, so they often ignore the patients problem, as long as it isn't life-threatening or caused by their negligence. I've often thought that this is a very short-sighted point of view but apparently, its a very common one with neurosurgeons. I would think they would be aware of these issue with post-op AN patients and at least refer them to a doctor/therapist who might be able to help them in some way.
Your doctor's cavalier attitude toward your facial issues seems callous and insensitive. "That happens sometimes" is very cold and unhelpful, in my opinion. I would seek out another physician that might be able to help you. It probably won't be a neurosurgeon. I hope and will pray that your problems can be addressed and rectified, soon.
Jim
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epodjn -
sorry to hear about your insensitive doctor. I fortunately didn't have to deal with this situation, but I can understand how upsetting it must be for you.
If you can tell us where you are located, perhaps someone on the forum who lives near you can recommend another doctor.
Just a thought,
Jan
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At the very least, your doctor should have listened to your concerns, then given you references to other physicians/centers that would be able to address the issues that he or she could not. My physician welcomes phone calls, and answers emails very quickly. I've never gotten the brush-off attitude that you are getting.
If you really feel strongly about it, I would fire him/her. You may also want to post something in the physician section here warning people about the post-op care. If you decide to do that, it is important to be honest. If he/she was a good physician as far as the surgery goes, say so. There's not a whole lot more you can do, unfortunately.
Ernie
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Also, sorry but I'm new and have so many questions and concerns and no one to talk to about them. But for those of you who have had translab surgry have you had any skull problems. I am developing odd bumps and depressions near the surgical site. It is causing my ear to recede back into my head and now my left temple is sinking in. Is that common? Does anyone else have that problem. My doctor just looked at it and said that happens sometimes, that's his answer to just about everything.
This post and one reply has been split into a new thread. J.S
Your head will change shape for a while. I had middle fossa and the cut is in front of my ear and toward my temple. Yes, it too has odd bumps and depressions near the surgical site. Honestly, only my hairdresser knows when she washes and cuts my hair. I accepted it as part of the "scarring" from the surgery.
Regarding your doctor..some have a caring persona and some don't...I have found that surgeons look at surgery only as whether or not they accomplish the objective and that the aesthetics come second. That of course doesn't help matters that he is insensitive. May I ask, how was the rest of your outcome? hearing, facial nerve preservation, balance? What were your expectations relative to the surgical site?
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Thanks for all your input. I think you are right. Surgeons are "cutters" and aren't too concerned about anything else. I actually had two surgeons who worked together. I feel the actually surgery was a success as they were able to remove the entire tumor and I had a pretty easy recovery. My balance is as good or better than before surgery. My hearing was lost on that side but I was prepared for that. I was not at all prepared for the paralysis. They said they would not need to go near the facial nerve. As it turned out the tumor was on both hearing and facial nerves and the facial nerve had to be cut to remove the tumor. I did have a primary repair which both doctors seemed to think went very well. My recovery has been very easy compared to many I have read about on this site. For that I am grateful. I was pretty much back to work at 6 weeks, walking a mile or two a day and very little discomofort. Then at 3 months I started to have strange feelings, not really pain, but pressure on that side of my head. Then I noticed the strange bumps etc. Just lately I have noticed that it is affecting my face. It looks like one cheek bone is sticking out farther than they other. It's not really that way, it's actually my temple sinking in and making it appear that way. That's when the doc told me "that happens sometimes". My cardiologist is the one doc who has been my real support. He sees me regularly, calls often just to check on me, and does a lot of neurological testing that the neuro guys don't bother to do. He is the one who suggested a new doc might be in order. He referred me to a new person but I can't get in until next month. That's ok, it's not like things happen really fast with this stuff so I can wait. I also want a referral for therapy. He thinks it's a good idea. The neuro guys say it's a waste of time. I would like to at least give it a try.
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My cardiologist is the one doc who has been my real support. He sees me regularly, calls often just to check on me, and does a lot of neurological testing that the neuro guys don't bother to do. He is the one who suggested a new doc might be in order. He referred me to a new person but I can't get in until next month. That's ok, it's not like things happen really fast with this stuff so I can wait. I also want a referral for therapy. He thinks it's a good idea. The neuro guys say it's a waste of time. I would like to at least give it a try.
Your cardiologist sounds like a compassionate doctor. I think that going for another opionion is a good thing. What part of the country are you from? Is the referral a doctor who specializes with AN's?
All the best,
Kate
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Not all neurosurgeons are insensitive. My surgeon was very unhappy about my facial paralysis and said he could not consider the procedure to have been a success because of it. He even emails me periodically to see how I am doing. In fact, I just got one the other day because my surgery anniversary is coming up.
Next time I email him I will ask if he does surgeries for AN. If he does I will let you all know. He practices in Detroit and is one of only a handful of specialists for hemifacial spasm surgery.
Sara
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Saralynn143, I think your experience is awesome. Mine is more like the OP...the surgeon doesn't seem to care about all my post-op nuisances, he likes to remind me of how sick I was and how I'm better now. However he was very supportive when I asked for a script to see a facial therapist. I love my surgeon, he is a great guy, but I suppose in his line of work...my being alive and mostly healthy is a good outcome for him.
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I live in Salt Lake City Utah. So if anyone knows of any good neurologists, facial therpists, occuloplastic surgeons, or anything or anyone who can help please let me know. I'm open for anything.
Finding this site has been so great. Until now I just figured I would have to go it alone, and that can be pretty lonely sometimes. Thanks to all!
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epodjn -
Anissa just had surgery at the University of Utah about a month ago and might be able to give you some information on doctors.
Here is a link to one of her posts http://anausa.org/forum/index.php?topic=8855.0
Good luck,
Jan
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I agree with you about the neurosurgeons being a little insensitive. I do agree that it's a case of "well you had a tumor, now you don't have a tumor, so this is a success". By their standards it was. I have even found my facial reanimation surgeon at Johns Hopkins a little cold at times. I don't know if they have to be because they are face to face with people in so much psychological/spiritual pain, or what. At my first consultation I began to sob telling my story to him and after I apologized for getting so emotional he said "don't worry it happens to me all the time" and I thought "happens to ME"! LOL! Sorry to make you witness to my emotional breakdown and I will keep my emotions in check for further appointments!
Rosie
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who are you seeing at Johns-Hopkins? I went a little over a year ago & had the T3 with Patrick Byrne - I LOVE that man!!!!
K ;D
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My AN ear sticks OUT & I was thinking about having it pinned back, but decided to grow my hair instead.
I'm with K on Dr. Patrick Byrne - he did a GREAT job on me too (reanimation for facial paralysis, T3 surgery).
As far as the scalp, yes, bumps & what nots, but my hair covers it. (Today I had my monthly facial & the lady who does it
was asking me about the AN surgery, when I told her I have about a 6 inch scar behind my ear she asked to see it b/c my
hair covers it (she was amazed at the size of the incision).
Always good thoughts, Nancy
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I agree with you about the neurosurgeons being a little insensitive.
I think it is important NOT to lump neuroscience doctors ALL into one group here…
I won’t deny, after I interviewed a few neurotologists and neurosurgeons (ok 9 total), that there were a couple (2 of the 9) who lacked social graces (not to mention one had a big self-inflated ego), but overall most of them I found to be very personable, well educated, and HIGHLY intelligent.
I do NOT find my neurtologist to be insensitive, just not always available (he has many other responsibilities because he is a leader of a med school) and a bit elusive as he keeps delegating my case to subordinates. The post op referrals are not happening as quickly as I had hoped … but the truth is, as a person, I have to confess I actually really liked my neurotologist back in California- and still do. I found him to be compassionate, sensitive and to have a fun witty sense of humor. (I wish who he delegated me to, here in Oregon was the same, but just wasnt ...nor had the experience my surgeon had.) I think when my neurtologist saw the unfortunate synkenisis develop in my face – the next months after I flew back for a check up he was probably quietly (and privately) self critical -but just did not show it in front of me (or his on-looking students) He and his neurosurgeon partner were at it for 11+ hours and perhaps at the 11th hour went at the tumor just too aggressively before the facial nerve probe alarm went off… and should have known to stop earlier and leave more residual tumor (as was the initial plan and agreement). You also have to know that rarely does the neurosurgeon or the neurtologist seal up the ole craniotomy hole- this is usually done by others on the surgical team. Some surgeons seal it up with a “skull putty†(calcium phosphate) so that cosmetically you do not end up with “Crater Lake†in your head (sorry Oregonian talk)… but some (not all) studies show that this increases the chance of infection- such as meningitis. Surgeons differ on that topic I discovered -in my interviews. Until less than 12 hours before I had surgery I thought I was getting the calcium phosphate, as I did not want a big crater. I discussed this specifically with the neurtologist. But the neurosurgeon, who I spoke to for the 1st time, said “no†(There I was already in California, booked in for surgery and learning this change in detail only hours before incision. I just had to trust the neurosurgeon even though I was questioning this before hand.) I came home with Crater Lake in my skull.
Also, as we talk about “neurotologistsâ€, know when I met Dr. Derald Brackmann I thought he was adorable and is just the sort of man you would want to be the grandfather of your kids as he had such a paternal way about him. Sensitive, smart, caring and compassionate he is… many here on the forum can attest for that.
Let us not label the neuro doctors as “insensitiveâ€â€¦ I would sure hate for all of us to be lumped together with one label (and I do know of one neurosurgeon who told his patient to “stay off the forum - they are all “wackosâ€!†…) It will be counterproductive in the long run. Just avoid the negative and stick with the positive ones.
If you are going to need more follow up work with a neurtologist and you cannot work with this one- you will have find another one.
There are none listed here for Utah
http://www.anausa.org/medical_center_directory.shtml
You may have to do what I did and go out-of-state. But you may also be in the boat I was in- that they do not know who is best to refer you to (back at your home state), as they are not networked there. I am realizing that I am the one who has to do the networking- and I have found my ANA support group to be a big asset. Many of them too went out of state.
It might also be worth to network with your neuromuscular facial retraining clinic staff, there in Utah, as they may have some doctors who they think are great to work with- from experience with other patients.
Cut & pasted from here
http://www.bellspalsy.ws/centers.htm
IHC Hearing and Balance Center
Salt Lake City, Utah
Janene Burton, PT, NCS
801-595-1700
Hey at least Utah has a center listed- Oregon is not there yet. (Soon though- it is coming- it is taking a team effort to get it up and running)
I am sorry to see there is not an ANA support group in Utah yet. Know that you are always welcome to a meeting in Oregon- we have lots of Washington State people come. I guess that is what is so great about this discussion forum- even if you are far away there are still people to talk to. For me it has been a huge help and resource. I hope that you and Anessa connect as it helps to have someone closer to talk to that can relate.
Stay positive.
HUGS
DHM
P.S. NancyAnn- you have always been so positive and most inspiring to me... you have been through so much. I decided to grow the hair long too. :)
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DHM: Like make-up, hair hides a 'multitude' of sins (is that the saying ?!).
Always good thoughts my friend.
ps: WE'VE ALL COME A LONG WAY BABY ! !
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I think its a case of the doctors deal with death and sickness every day.... it would be traumatic unless you turn the emotions off .. like a funeral director .. some doctors are better at this than others of course...
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Some surgeons seal it up with a “skull putty†(calcium phosphate) so that cosmetically you do not end up with “Crater Lake†in your head (sorry Oregonian talk)… but some (not all) studies show that this increases the chance of infection- such as meningitis. Surgeons differ on that topic I discovered -in my interviews. Until less than 12 hours before I had surgery I thought I was getting the calcium phosphate, as I did not want a big crater. I discussed this specifically with the neurtologist. But the neurosurgeon, who I spoke to for the 1st time, said “no†(There I was already in California, booked in for surgery and learning this change in detail only hours before incision. I just had to trust the neurosurgeon even though I was questioning this before hand.) I came home with Crater Lake in my skull.
At the Chicago symposium Dr Kazan gave a very convincible argument as to why not to use the skull putty... Although I do not like the crater in my skull- I think my neurosurgeon made the best choice... it just took me time and question asking , of me, to understand this more. Dr Kazan also showed a video of a tumor dissection and how intricate it is. I came out of his presentation more respectful than ever of how tricky and difficult these surgeries can be.
DHM
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Hijack here.
DHM -
I thought the video was amazing. I originally went to this session because Dr. Kazan is my neurosurgeon and I wanted to see him speak. I walked away with a lot of valuable information - including the odds of my own AN recurring - since Dr. Kazan does surgeries with not only Dr. Wiet, but with Dr. Battista.
Jan